If they your DH is not listening you could try earphones or ear plugs and dark glasses. Or say you are going meditating and mustn't be interrupted. Or just have a really serious talk with him. Check whether he feels rejected when you need your own space and why he keeps having to bother you.

Hi!! Would like to be able to build an extra room on your house for you!! Seems as though that's what you need! It also sounds like your people are just not understanding that you need QUIET for a certain amount of time each day.

I do my meditation/quiet time from four to five each day. EVERYONE knows not to knock on my door or interrupt me during this time. You can't keep a dog from barking or a horn from honking outside, but those you live with should understand and honor your request for privacy and quiet when you need it.

I do my meditation exercise in my bedroom. As you said, we are not supposed to use the bedroom until bedtime, but I have had to forego that rule. My room is the most private, quiet place in my home and I do my meditation sitting up, so I'm not going to fall asleep. I told my husband/kids/friends years ago that this one hour, was MINE! I have found everyone to be very cooperative with me!! I take my phone and bury it in the bathroom! Under the towels! Someone else can answer it. This is my time. If I do not get this rest, the rest of my day is shot. We need to reboot!!

Maybe you just really need a serious conversation with DH that you are taking a "certain time" each day to help with your illness, and you need to not be interrupted. There's no reason he shouldn't be willing to comply with this! It's to help you with your illness, and it's necessary.

I work my schedule around my 4 PM downtime. If you can do that, others will get used to it in no time and you will get the needed peace and quiet that you need.

Speak up!! Sometimes people just don't understand, that's all. We have to let them know what's really important to us. They can't help it that they don't "get it". Praying this works out for you! xo

I hear you, girl. I am going to a conference this week and I am going a few days early to have a silent retreat. I'm going to go for 24 hours with no noise, no one in the room, no TV, no "Mom, I'm hungry." It's the only way to get re-centered for me. I know it may not be a possibility for you right now, but you have to explain to your family that you have to have some quiet time. You HAVE to have some quiet and space. Many blessings.

The problem is that fit and healthy people just do not understand this debilitating illness! I have had severe cfs since 2002.
Had many severe relapses and am now 90% bedbound/housebound.
My CFS is caused by mitochondrial dysfunction!
My ex husband thought i was faking the ilness even after the results came back.
Anyway, I now live alone and that is the only way I can cope!
Friends and family do not understand and I refuse to discuss it with them anymore, as I was repeatedly told to pull myself together.

If you need to use the bedroom for your down time then do it! I have complete blackout blinds, and I am deaf now(due to the MD) so noise sensitivity is covered when I take hearing aids out!

I would ask for/or print off some written information for your husband to read as he is not listening to you and it saps your energy trying to explain over and over.

The porblem is the longer this goes on the worse the symptoms get as your body cannot cope without complete rest!

Thanks for your support and suggestions, everyone! You're right-I do need to talk to him. He is a very defensive person, so that's a talk we *will* have when it's not currently happening. Tuesday night sounds good to me. (If I don't schedule talks like that, they never happen!)

You're also right that I might just have to move to the bedroom for this one. I can get one of those "closed until x time" clock signs. IT's funny, but it'll get that point across and most of my family will laugh and not get offended by it.

The retreat idea is another good one. I was just thinking the other day how nice it would be if I could spend three days at our time share at the beach. Alone. When the doc agrees that I cannot work --or I declare that I am just plain done with it, which ever comes first--that might be one of the first things I do. DH is usually supportive and I think he'll understand.

Thanks again for your support!

I hope your talk with your husband goes well. I'm a person who believes that relationships should be equal partnerships, but I know that there are many who don't believe in that.

But whatever your beliefs are on this subject, I would encourage you to be very firm on this business of letting you have time to relax and recuperate each day. He's treating you like you're just a shirker and he's bullying you. Try to impress on him that he's making you physically ill by treating you this way...maybe that will wake him up.

You have to stand up for yourself, there's no getting away from that.

Thanks, Richie! Yes, we believe in equal partnerships, too. I think he'll be surprised to find how negative the impact is from his behavior. I usually ask him for suggestions, which helps him to be less defensive and more open to change for making things better. Will update after we talk tonight.

thanks!

Hi Jenna, I struggled with the same issue for years. My husband is a very needie and defensive person, very demanding of my attention. Carefufl explanation of my symptoms and how noise, etc. affects me and makes me worse just didn't seem to get through. All he saw was he wasn't getting what he needed from me and that made him more demanding and caused more stress and tension in our marriage and made me worse. Constant questions were a demand for my attention and when I'd had enough and snap at him he'd say I was being mean to him and pick a fight, I was the bad guy. My therapist told me that was actually his way of getting my attention.....that to him, fighting with me was better than my silence. I finally asked him to move out. NOW, a year and half and several months of therapy later, he sees how his behavior and inability to see my needs and give me space had made me worse. And yes, we live apart, but are maintaining our marriage as best we can. It's odd, but so far it's working better than when we lived together, and I am able to much better manage my illness.

I don't want this to happen to you......you need to be your own advocate for your health and quality of life. If he can't give you what you need, you have to try to get it any way you can. The sign on your door is a great idea. Is there another room you can make cozy for your daily retreats? Or just getting a nice comfortable recliner for your bedroom might make all the difference.

One thing I can suggest......when you are feeling better and have the mental and physical energy, write your husband a letter. Tell him all the ways he makes your life easier and all the things you appreciate about him, all the reasons why you love him. Tell him what you need when it comes to quiet time and why. Let him know it has nothing to do with him and everything to do with the demands of the illness, that this is not how you want it to be, but this is how it is and you need to try to make the best of it. That your quiet time allows you to give your body what it needs so that later you can be more available for him and the family. Ask him to read that letter whenever he starts feeling neglected or ignored.

Some men just need way more mental stroking, learning what makes him tick will help you get what you need also.

Good luck girl! I wish you the best!
Genie

First - sending you tons of hugs. I get it!

First - I have headwear - the kind shooters use. If I need it quieter - I add earplugs underneath.

I also bought a set of headphones that are noise canceling that I can play meditation or the flaming music on.

Last - despite that space - I have locks on ALL our doors. I also have a cute little sign that I hang outside my meditation space (our MB) that says "Meditating". I will admit my husband (usually) respects my space. But when all else fails (he DOES work from home ;-) I take a hot to warm bath with the door locked and headphones one.

Sorry - NOW that last. I take time outside whenever I can. Alone. To just breathe. Good luck!

oops. sorry for the typo. I meant to say "Calming" music!

The therapist in me is wondering if you and your husband have tried couples counseling. My husband and I went when I realized this disease was not passing very fast. It was helpful for both of us. I check in all the time with him as well on how HE is doing with what is going on with me. And he has learned to do the same.

I think it IS difficult for someone not experiencing this to truly understand. And I do not think they have to - they just have to respect what you state your needs are.

I hear ya. Loud noises and bright lights and busyness really bother me at the end of the day.

I have my own room and by 7 pm, I'm in my room w/ my fan on for white noise and playing soft music and watching something relaxing on my Kindle.

I have to have this time each evening.